A single tick bite stole Emma Love from her health and the happy life she had known.
Just five weeks after Co Fermanagh's wife spent a weekend camping in the Scottish Highlands, she suddenly froze and fainted as she tried to get up.
Emma crawled into bed hoping it was just the flu, but tragically the helplessness in her legs was the first symptom of potentially deadly Lyme disease – and worse then.
Unbeknownst to Emma, she had been bitten by a tick that sent a terrible bacterial infection into her bloodstream and, three years later, is in her brain.
Without an accurate diagnosis for three years, she experienced a series of debilitating and often terrifying symptoms, not only changing intensity but coming and going without pattern.
But now Emma knows she has probably missed the chance of a complete cure, but finally she has a diagnosis that has given her a path to treatment.
Emma said, "I suddenly got sick a few weeks after camping in the Highlands, Scotland, in 2016. I was camping with my partner Ryan. We had a great escape, but we hardly knew how much I would have to pay for that little pleasure.
“One day when I got up, my legs gave way and I fell to the floor. I had no strength in my legs, and although I gradually returned, I had numbness, pins and needles, and weakness in my left leg.
“I think of the weekend in the Highlands and remember that I was so happy and carefree, but it ruined my health and my life.
“I've done a lot of tests, including brain and spinal MRI, blood tests, and neurological exams.
"I was discharged after a week and warned that no one honestly knew what was wrong with me. I would have to visit neurology as an outpatient.
"Then, to my left, I was unable to use my left arm, it was not safe for me to be alone. I would burn myself and not feel the burn on my left arm until it was too late. I could not get in and out of the bath nor make me tea.
“I was tested for all types, including multiple sclerosis and my symptoms continued to get worse.
“Every month I developed a new symptom or pain and did many tests, noninvasive and invasive, including countless MRIs, nerve conduction studies, and lumbar puncture.
“I was diagnosed with functional neurological disorder, migraine, retained nerves, fibromyalgia, costochondritis, trochanteric bursitis, which is inflammation of the rib cage and hip joints.
Despite the NHS's best efforts, it was only when Emma's great-aunt mentioned the possibility of Lyme disease that the picture suddenly became clearer.
Research at home revealed that each of her symptoms could be attributed to Lyme disease, and extensive testing by private specialists proved her aunt was right.
Emma said: “My mother researched the best laboratory for the Lyme disease test, which was completed in Germany and a week later the results were obtained.
“They showed that I have chronic Lyme disease or Lyme neuroborreliosis, which means that this bacterium has lodged in my brain. In addition, I have co-infections and a very suppressed immune system.
“So after three years of suffering, I now had an answer.
“Since then, I've followed every possible route to get the NHS treatment, but due to the lack of recognition and resources in Northern Ireland, the options available have not yet been answered.
“The top priority for my family and me is to get better again, as three years of my life have been lost to unexplained illness and misdiagnosis.
“So we have no choice but to go back to the private, but with my family running out of ways to pay private commitments, I have to ask for help.
"I have been unable to work for two years due to this horrible illness. I really want this treatment so that I can improve, get back to work and live the normal life of a 29 year old.
“I have been sick since I was 26 and I feel I have lost a lot, this disease has taken a few years of my life and now I know what is causing the disease, I want to treat it and get better. .
"It's scary, because if chronic Lyme disease is not treated, it can lead to death. At the moment, I have all the symptoms of the disease, as well as heart problems, so I want to be treated as soon as possible.
“We now find a private specialist and, following his treatment plans, his patients report coming back to almost complete health, which is amazing.
“These consultations are expensive and he deals with Western medicine and alternative medicine. Therefore it will be a long term treatment plan that includes the use of medications for up to two years. "
Now Emma, a former student at the University of Western Scotland at Paisley, hopes that a massive, long-term dose of antibiotics will help her regain some of her old life.
She explained: “There are days when all I can do is lie on the couch and hug my dog. I'm in pain all the time, I'm exhausted. My memory is terrible, my concentration is very low and I feel decrepit. I have developed problems with my entire left side and have constant weakness in my left arm, leg and neck.
“I just want to get my life back. I used to be so busy and happy and full of life and fun.
"I have my first appointment with the specialist in February, which may not be fast enough. It will be a long process, but there is light at the end of the tunnel for the first time in recent years."
Emma's life in Scotland began with high hopes in 2010 and she completed my BA Hons in Tourism and Event Management
She said, “After I graduated, I stayed in Glasgow, got a job at NHS 24, and found that I really enjoyed helping people. I never thought about it, would have to ask myself for help or get chronic sick, especially everyone before turning 30. "
Emma had to leave her job and life in Scotland and moved home to Enniskillen two years ago to be closer to her family.
She had to give up her job and her freedom and trust boyfriend Ryan to become her caregiver.
She said, “Ryan stayed with me, but our lives have completely changed. I'm not the person I used to be, Ryan had to give up his insurance job and take care of me and he took a part time job at KFC and needs it to have a break from taking care of me all day.
"I can't go back in time and I am determined to improve as much as possible, but I need help."
It means going through heavy, long-term antibiotics to try to control the bacteria in your brain.
And it will initially cost thousands and so far Emma has raised 2,300 pounds and needs and another 2,000 pounds to pay for her consultations.
Emma said, "I can't believe I'm in this position asking for donations to help me get my life back. I want to be the person I used to be – or as close as possible."
If you would like to help Emma achieve her treatment goal, click here.
The 88 reported symptoms of Lyme disease:
- Hair loss
- Chronic fatigue
- Headache, mild, severe or migraine
- Head pressure
- Facial or other muscle spasms
- Facial paralysis
- Tingling in the nose, tip of the tongue, facial or facial flushing
- Stiff or painful neck
- Jaw pain or stiffness
- Dental problems
- Sore throat
- Dripping nose
- Blurred or double vision
- Floating point increase
- Pain or swelling around the eyes
- Super light sensitivity
- Flashing lights / peripheral waves / ghost images in the corner of the eye
- Hearing impairment
- Ringing in the ears
- More sound sensitivity
- Tap one or both ears
- Irritable bladder
- Interstitial Cystitis
- Acid reflux
- Bone pain
- Joint pain / swelling,
- Carpal Tunnel Syndrome
- Stiffness of joints, back, neck
- Muscle aches or cramps,
- Shortness of breath, unable to complete / satisfactory breathing, cough
- Chest pain or rib pain
- Night sweats
- Unexplained Chills
- Heart palpitations
- Burning or stabbing sensations in the body
- Chronic Fatigue Syndrome,
- Weakness, peripheral neuropathy
- Partial paralysis
- Numbness in body, tingling, pinpricks
- Poor balance, dizziness, difficulty walking
- Motion sickness
- Mood swings
- Unusual depression
- Disorientation – getting or feeling lost
- Feeling like you're losing your mind
- Overly Emotional Reactions
- Difficulty falling asleep or falling asleep
- Sleep apnea
- Panic Attacks
- Memory loss
- Difficulty with concentration
- Speech difficulty – slurred, slow or stuttering speech
- Loss of sexual desire
- Menstrual pain, irregularity
- Chest pain, discharge
- Testicular or pelvic pain
- Ghost Smells
- Unexplained Weight Gain or Loss
- Extreme fatigue
- Swollen Glands / Lymph Nodes
- Unexplained fever
- Continuous Infections – Sinusitis, Kidney, Eye
- Migrating the pain
- Flu-like illness
- Low body temperature
- Allergies / Chemical Sensitivities
- Increased effect of alcohol
- Depression and anxiety
- Mobility Issues
- Brain fog
- Chronic sore throat
- Unregulated body temperature
- Low B12, Low Vitamin D, Low Folic Acid
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